Sentimental Journey (#555)

We drove down the Nimitz freeway (“now we call it 880,” my mom said) under a completely blue sky, thanks to a strong wind. The hills rose green to our left as we sped past low-slung hi-tech company headquarters, Charlie sitting straight up in the backseat between Jim and me. I had showed him the calendar his ABA therapist had made for him to mark off the days we are here at my parents’ house in California and then—come Sunday—-the square divided by a diagonal line, half with Gong Gong’s and Po Po’s house and half with “Grappa’s house” in New Jersey. “We’re going to something like a school,” I said.
Charlie’s cheeks pulled tight: No wonder, I thought, here we are on vacation. But I prefer to tell him what will happen in advance, even if this makes him anxious; on the trip home—driving back up the unfamiliar highway and stopping at a Target painted in golden oranges, browns and yellows with the red bull’s eye obscured—Charlie in his disorientation cried out sharply.

These worries (unlike yesterday’s) passed and Charlie, once back in my parents’ house, was smiling, searching for clementines and “tisshoe” (a napkin) to peel on the white couch (not that my parents mind). “Payano!” He jumped to try out the new keyboard we had gotten for him and then ran to get his coat and shoes to have a dinner in Chinatown. Jim and I went out to celebrate (belatedly) our 11th anniversary at a favorite restaurant in Berkeley. An Asian family was dining at the table next to us, a baby carrier on the bench. I surmised it was a boy from the blue baby pillow and blanket, and one blue-buntinged foot. The baby was sleeping and, as his mother turned to look at him or rock him gently, I remembered how, nine years ago, we had dined at this very restaurant with my parents and Charlie, a baby in a blue hooded coat.

My parents took me to this same restaurant after I graduated from college and for many a birthday, too—to mark the stages of my own growing up. The sleeping baby made me think of how far he has come.

And of how far he has to go. In truth, I think about this question all the time and every day: What will happen when Charlie finishes school (at the age of 21, in New Jersey)? What will his life as an adult be like? What about after we are gone?

We got a few glimpses towards how to answer these questions today when we visited what I had referred to as a “school” to Charlie on the ride down the freeway. We visited Friends of Children with Special Needs (FCSN), a center that provides after-school programs for children and day programs for adults with special needs, as well as supported living and job training programs for adults. I had read about the center on the internet (I posted this on Autism Vox earlier this month). FCSN is located in a community, in a town called Fremont; there are plans to open up another center in the South Bay.

Charlie walked around and sat nervously in some chairs (“we’re going back to Gong Gong and Po Po’s house,” we tried to assure him). He went to sit in the car with my parents as Jim and I talked to the director, watched a video about the center, and talked about why FCSN’s “village” model is so important to providing lifelong supports and services for kids with autism, Down’s syndrome, and special needs.

Jim and I felt privileged to meet autism mother Anna Wang, one of FCSN’s founds and mother of 16-year-old Lawrence. She smiled as she told us of raising funds for the center by, among other efforts, parents deliverying baotz (steamed filled buns—a treat my great-uncle Walt used to bring in pink bakery boxes) to Silicon Valley companies. It does not just “take a village” to raise a special needs child, she noted: “It takes the whole Bay Area!”

I am not sure where the village will be that Charlie will one day live in, but I know we need not only to start looking for it now. We need to start building it right now, today, as Anna Wang and the members of FCSN have begun to do—-and we need most of all to teach Charlie how to be one of the builders, too.

It will be his village, ultimately. And today I felt as if we were moving along to yet another stage on our Autismland journey with Charlie.

Comments

Kristina… That is a super gorgeous pic of Charlie. You oughta put it on the wall.. He is just so happy and full of life.

You know it is funny how we are all different. I try not to look to far into the future… Though one has to plan .. to an extent.

I have to admit that I have not considered what may happen when Mark grows up..]

It is in Gods hands.

Che Sera Sera.. I say.

God works in mysterious ways.. Charlie may not necessarily end up in a village.

You know, before I had my special boy Mark, I was extremely apprehensive and nervous.

Almost a year before I had a baby with a neural tube defect. Anencephaly, to be precise.

I remember having that ultrasound at 15 weeks.
I remember the specialist saying.” I’m sorry, but your baby is going to die.”

I stumbled out of that darkened room. Too stunned to comprehend the magnitude of what I had been told.
Just remeber going from darkness into brilliant light.
It was a beautiful sunny when my world came crashing down upon me!

I spoke to my obstetrician, who was very understanding.

An abortion was out of the question. As a practising Catholic it was not a consideration.

However, I did wonder how I would cope. Babies with anencephaly usually go full term, but die soon after birth.Not being that strong I prayed to Jesus and his blessed mother to give me the strength to get through this.

I also prayed initially for a miracle, as did my family.

As the weeks passed I came to the realization( through prayer) that this was the will of God.
There was a miracle all right , but not the one I had initially sought. It was a miracle of the soul.

Now this is very hard for many people to understand, I know ,but I just accepted Gods will.

Interiorly I felt that this was my chance to prove my love for Jesus, by accepting his will .

And, as a neighbour pointed out, If Mary Rose had not gone to heaven, then we would not have had our darling boy Mark. We were only ever going to have 2 kids.( Mark is 6 and I am 48)
God gave us another special gift in Mark. To take the place of Mary Rose…

Kathy, I’m completely overwhelmed reading about Mary Rose—I’ve only slowly started to bend my mind to the future. Somehow I find myself taking some joy in thinking about what might for Charlie in the future, rather than fearing it—it feels a good thing to know about what might happen. I used to just think about the future and feel fearful (especially the part of Charlie’s future that I will most likely not share with him)—-but then when the big questions pile up, I take your advice, and just breathe in deep and enjoy the good moments of today. Because there are certainly a ton of them with Charlie, as with Mark—I too am never disappointed!